In a Different Key: The Story of Autism (26 page)

Gilhool demanded, first, that every child in Pennsylvania who could qualify for the label “mentally retarded” be searched for and found—whether at home, at Pennhurst, at some other institution, or at school. The deadline for this was set for June of the following year, and part of its purpose was to let parents know their child was now entitled to a free public education. After that, school systems would be required to put together a plan specifying how they would begin offering each of them education and training,
“appropriate to his learning capacities.” He made clear what this was supposed to mean: programs were tailored to the individual child, and the programs themselves were to be held in settings as “normal” as possible. Specifically,
“placement in a regular public school class is preferable to placement in a special public school class, and placement in a special public school class is preferable to placement in any other type of program of education and training.”

The terms of the decree, which the state began putting into effect in 1973, were immediately recognized as a landmark advance for disability rights and education. The ripple effects were felt almost immediately as lawyers representing parents rushed to bring like-minded lawsuits across the nation. Most of them borrowed some of their intellectual framework—and, in some cases, exact language—from Gilhool’s Pennsylvania suit. By the end of 1973, some
thirty federal court decisions had affirmed the principles established in Gilhool’s case. Meanwhile, legislatures in statehouses across the nation were starting to update laws to guarantee education for the mentally disabled through the public school system. State officials were making public pronouncements to show they recognized that the right to education was real, and that adjustments to the way things had been done for decades were required.

There was just one catch, in all this, for autism families: everything good that was happening all of a sudden, and in so many places, was driven by a sense of outrage on behalf of one distinct group of kids—those with so-called mental retardation. To be sure, it had been these children’s parents who pushed the legal action, and it had been these children’s plight, and potential, that had received unflaggingly sympathetic media coverage.

But unheard in the outcry was any mention of the terms
autism
or
autistic
. These terms were as unfamiliar to the larger public as kids with the condition were invisible. Overlooked in the outrage, they were also missing from the agenda of motivated legislatures.

It was clear what autism parents needed to do, to become part of this moment, and this important conversation. They had to change the subject, maybe a little, maybe a lot, to make their kids a part of it.

16

GETTING ON THE BUS

F
or exactly seven days in 1974, the most visible person with autism in the world was a handsome, brown-haired boy named Shawn Lapin. Beginning on April 8, every newsstand in America carried the issue of
Newsweek
whose cover story,
“The Troubled Child,” sounded the alarm about a major outbreak of “emotional disorders” in American children. The article profiled a small number of children struggling with various kinds of mental health challenges—from schizophrenia to depression to various “neurotic symptoms.” But the one the editors chose to focus on, with four photos and a sidebar, was the six-year-old with autism, Shawn Lapin. That had a lot to do with who his parents were.

Connie and Harvey Lapin had made it their mission to push for maximum attention for their son, and for access to the top people anywhere in a position to help him. Movers and shakers—they all heard from the Lapins, sooner or later—whether these were lawyers like Tom Gilhool, who had just won the PARC case; leading researchers like Ivar Lovaas, who was then experimenting with a promising therapy at UCLA; officeholders like Gov. Ronald Reagan, who had something to say about how government funds were spent; or even just other influential parents like Bernard Rimland and Ruth Sullivan. The Lapins worked at making direct connections to all of them. Connie and Harvey embodied the new paradigm for the autism parent—out to create an opening in the world for their own kid, which they took to mean changing the world itself.

—

H
ARVEY AND
C
ONNIE
Lapin were incessant doers—one of the many ways in which they were a matched set. Both were fit and good-looking: Connie, light, spry, and brunette—model-like; Harvey, tall and broad, a big smiler with a big 1970s handlebar mustache, a bear-hug-type guy rather than a handshaker, and a ceaseless narrator of whatever was on his mind. Holding a conversation with Harvey was like a riding a Ping-Pong ball through a championship match. The thoughts came fast and urgently, and never in one direction for very long. Connie, however, had a gift for translating Harvey’s word stream, or reining it in. In their early thirties, they were passionate about each other, entertaining storytellers, and superb at making friends.

In the mid-1960s, Harvey had a thriving dental practice in the San Fernando Valley, on the north side of Los Angeles. Famous Hollywood types were coming in to get their teeth seen. Dr. Lapin was good, and a total charmer, much as their life in the Valley seemed charmed.

Their first son, Brad, was born in 1964. Shawn was born in 1968. In 1970, he was diagnosed with autism.

Connie and Harvey were among those autism parents who experienced the heart-piercing sense of having seen their child regress. That is, Shawn had appeared to both his parents to be developing as he was supposed to, and then, suddenly, his behavior began to change.

With Shawn, it seemed to happen in the space of a day or so, when he was around thirteen months old. He had walked early and learned to use three or four words. He did have trouble holding things before that—a bottle put in his hands would hit the floor within seconds—but other than that, he had every competency an early toddler was expected to possess.

Then, before Connie’s eyes,
he suddenly tuned out. The words vanished, he pushed her away when she or anyone else reached for him, and he started crying, practically full-time. The sleeping problems started then too. The four hours a night he’d sleep were interspersed with constant crying. Whenever dawn came, more often than not, he would still be at it.

His parents rushed him from doctor to doctor, who ran through the usual list of possible explanations—ear troubles, childhood psychosis, brain damage, countless others. Tests were done; theories proved false;
new ones conceived; more tests done. Throughout, Shawn kept crying through the night. He was a screamer and a runner, almost impossible to control. Every small task in his day was a pitched battle. Dressing him—because he hated to be touched. Giving him lunch—because he would fly into a rage if the items on his plate were touching. He destroyed the furniture. And escaped through the windows. And defecated on the kitchen floor. Months went by, then more than a year. And then, finally, Connie and Harvey heard the word “autism.”

It was just by chance that, half an hour from their own front door, a group of young psychologists, all working at the University of California at Los Angeles, had sometime earlier become fascinated with children who had autism. Based at UCLA’s Neuropsychiatric Institute, they were among the first anywhere to persist in actual research on methods for treating autism, without reference to any notion that bad mothering was involved. Getting Shawn in for a consult took some doing, but once he was seen, the diagnosis took no time at all. Shawn’s autistic symptoms came straight out of Leo Kanner’s original write-up on his first eleven cases. The term
classic autism
described cases like him.

The UCLA people had read Rimland, they knew the kids, and they had long ago dismissed the refrigerator-mother idea, so Connie never had to endure any mother blaming. The battle she faced would be on a different front, and it would define a new era for autism advocacy.

She wanted Shawn to go to school.

But no school wanted him, or any child with autism.

—

A
S IN NEARLY
every other state at the time, the law in California granted public school authorities the unchallenged power to refuse education to children they deemed “ineducable.” Even in special-education classes—which often lumped together, in one classroom, the intellectually disabled with the epileptic, the speech-impaired, and so on—there was a cutoff for kids who seemed too disabled, physically or mentally. Schools didn’t like doing it, but it was the reality:
they could and did say, “Go away.”

The Lapins collided with this reality only after they started Shawn,
then three years old, in a Los Angeles district public school early intervention special-education class. After three days, when Connie arrived to take Shawn home, she was informed that his teachers had consulted with their superiors, and that “it was decided” that he should not return the next day, or ever. He had been running around disruptively, biting other children, and refusing to do anything he was asked.

Connie started talking fast, begging the school head to give Shawn another chance. She was refused on the spot. A boy with autism, she was told, who was so wildly out of control, could not be let loose among so many vulnerable children. It was dangerous and not conducive to learning.

Chastened, hurt, Connie took Shawn home, and began making calls, careful not to mention the word “autism” as she scrounged for alternatives. She found another public school, farther away, with a program similar to the first. Not that she believed there was much actual education happening at either place.
Conducive to learning
. That was a bit of a joke, she thought. From what she’d seen of the first classroom, it resembled group babysitting more than schooling. Still, something was better than nothing. At this second school, however, Shawn was asked to leave after only one day.

At a third school, the same thing happened. After that, word was out about Shawn in the public school system, and about his mother. Connie was asked, and not very politely, to stop wasting everyone’s time.

This was a low point for Connie. She had dodged and weaved, begged and bent the truth, but she had failed to find a publicly funded preschool program willing to take her son. After that, she and Harvey began a search for alternatives, stumbling upon a small private nursery-school program for children labeled “mentally retarded,” and a research program seeking children with autism to experiment with the use of behavior-modification techniques using rewards and punishments.

For a time, they had Shawn enrolled in both programs, but neither did him any good. The nursery program was expensive, and in no way addressed his autism. As for the experimental program, Connie was horrified by the punishments the researchers used to change behavior.
Shawn was slapped and had diluted mustard squirted into his face. Connie felt he was coming home every day traumatized rather than educated.

By this point, Connie and Harvey felt close to collapse. Essentially, they had a four-year-old boy with nowhere to go, and a home life fully controlled by a condition that could not be controlled itself.

—

A
ND SO, IN
1972, she and Harvey took the first steps toward placing Shawn in an institution. They had two reasons for doing so. The first was their feeling that Shawn’s behaviors added up to an emergency beyond their expertise as parents. They admitted to themselves that if his problems had been purely medical—if he had been unable to breathe, or to stop bleeding, or to stop vomiting—they would not have hesitated to place him in professional hands.

The other reason was the need for some rescue from the strain, which was nonstop. Shawn was a struggle through every night, into every morning, and then all over again. This was taxing the whole family, which by now included another baby boy. Both Harvey and Connie feared what would happen when they reached their respective breaking points, when the sleep deprivation, confusion, and psychic pain of not knowing how to help their struggling middle child finally drained off their last reserves of optimism and energy.

Connie and Harvey were also, in some way, grieving over the upending of their own lives, which had changed so dramatically and unexpectedly. Being a parent is hard enough when a child does not have a serious disability. But when he does, and it is so acute that grandparents or babysitters cannot step in to provide respite, the unrelenting pressure cannot help but take its toll. Indeed, there had been some truth all along in the argument doctors made to parents through the decades when they prescribed institutionalization. It was no solution for the child, but it did address, in one stroke, a large part of the parents’ problem, which was real and acute. For some families, twenty-four hours a day of handling severe autism, unrelieved, is a challenge beyond what love alone can handle.

Early one morning, the entire Lapin family drove out of the Valley,
one hour west out to the Camarillo State Hospital, to inquire about a space for Shawn in the children’s ward. Connie felt numb as they turned their car onto the grounds, following the same driveway that Alec Gibson had taken with his son Dougie a few years earlier. She had never seen herself as a mother who would have her son committed. Harvey, she knew, felt the same way. Shawn, in the backseat, didn’t understand where they were, but eight-year-old Brad, sitting beside him, was scared. He had figured out that in some way, this trip was about his little brother leaving home.

But Harvey and Connie were pleasantly surprised when they stepped out of their car. They had not been prepared for how beautiful Camarillo’s campus was, or for the warmth of the greeting extended them by Norbert Rieger, chief of the children’s psychiatric section. Rieger personally showed them around, with a tour and talk that lasted the entire morning. He showed them cheerily decorated classrooms and residential cottages that looked clean and orderly. For Harvey, it was both reassuring and disorienting at the same time, not to see the “snake pit” asylum he had imagined. Making his way down the intersecting corridors, climbing the connecting stairwells, Harvey felt not so much regret or sorrow as just plain confusion—as if he were walking through a maze. Had the place been horrible, it would have simplified things: he would have walked away.